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Brain injury survivor and advocate. Exploring identity, disability, the good times, the bad times

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I’m not broken (Findings, part VI)

“I’ve done a lot of work to recover from my brain injury. But that’s not what other people see when they call me disabled. It feels like it’s my fault, like I still have more work to do. . . . When the truth is I’ve come a far way from my brain injury and certainly a far way from disability,” Carly tells me.

Her account reiterates the distinction brain injury survivors make between injury and disability, and the need for some to relate to injury. Because society often equates disability with “brokenness,” including some brain injury survivors themselves, some individuals choose injury over disability to communicate that they are not their brain injuries; they’re not something broken that needs fixing.

Further, Melanie’s account testifies to what the underlying difference may be between injury and disability, according to brain injury survivors. Based on her experiences, Melanie still sees the potential to recover from her injury, even if the potential is faint.

Melanie says:

I want to get back to my pre-accident ability. I want to work and hold a full-time job that’s mentally stimulating and go back to school. I want to play sports again and work out… I feel like I’m always resting and putting minimal stress on my brain.

“It helps me to know that I can fully recover from this thing [brain injury] if I think of it as not permanent.”

While Melanie acknowledges her current limitations from the brain injury, she also sees them as temporary, as an injury to overcome. Because part of her injury is cognitive and the brain is able to adapt, she has hope that her brain can recover still and she’ll regain cognitive abilities. By identifying with injury over disability, she associates herself as on the path to recovery, which is transitory, liminal, and not enduring.

I get what Melanie means with the need for hope, but in contrast, does disability have to mean hopelessness?

Just sayin’, maybe we as a society should reshape our understanding of both brain injury and disability so that people – across the entire spectrum of ability – don’t feel perceived as “broken.”

The literature behind identification with disability is intricate, interweaving, and yet contrasting. The definition of disability created by the World Health Organization (WHO, 1980) includes any restriction or function loss in a person as a result of impairment, inhibiting the performance of an action.

Based on this extremely broad and outdated (cue eye roll)definition, individuals with brain injuries have a disability, whether or not they want that label and whether or not their injury is permanent.

It’s interesting then that the participants of my study largely dissociate from the disability label. Lack of identification with the label could be a coping mechanism, such as a problem-focused strategy; individuals take actions (in this case, strategic language choice) to eliminate the stress they perceive is associated with the stigma of disability in society.

Research by Olney et al., (2004) supports this claim, finding that individuals who identified with having a disability may lead to lower satisfaction and increased mental problems associated with disability.

What do you think? What have your experiences been, one way or another?